This weekend was one for the books. It was a marathon. I knew it would be taxing, but I had no idea just how taxing it would be. God got me through it, but I'm starting to understand why hospice patients don't leave home much. All the same, I am not sorry I went through with any of it. And I have no intention of slowing down, because my disease is still speeding up.
I continue to collect symptoms. It seems like there's new one every week. The one that started this week is not very nice, and it's not relevant to this story, so I won't talk about that today. But it's telling that, for the first month of hospice care, I had no symptoms to report to my nurse. Now, I have something new to tell her every time she visits.
The symptom that I was most concerned about going into this weekend was fatigue. That run down feeling I've been having, which seems to be increasing. I can't seem to get enough sleep. No matter how many hours of sleep I get, I still don't feel rested. I'm tired all the time. I had some important events on my schedule this weekend, so I felt I needed some help to get through it.
I told my hospice nurse about this when I saw her last Wednesday. She suggested a steroid called Dexamethason. Say that three times fast. It's supposed to help with energy and strength. I knew I'd need both to get through this weekend, so I asked for some to be delivered. That's one cool thing about home hospice. Everything comes right to your door.
The pills arrived Friday night, and I took one of the pills on Saturday morning. I needed the energy to get through the day, and I'd been told by more than one hospice nurse that I shouldn't take it too late in the day, or it might prevent me from sleeping. I took it at about 7:30 AM.
This was a big weekend for me. On Saturday, The Littleton Conservatory Of Rock, where I am vocal and performance coach, held our first rehearsal for our winter show on January 27th. The rehearsal went from 10:00 AM to 3:30 PM, and that was a short one. I don't need to tell you how important this is to me. Rehearsals are thrilling, but exhausting. I needed energy for that. The steroid worked wonders for my energy level. I felt like I was forty years old again. It was awesome. I still battled some nausea and balance issues, and had to sit down a lot, sometimes at odd moments. But I got through the day with flying colors.
As soon as I arrived at home, Sharon and I headed back out the door to meet our friends Victoria and Andrew. Victoria and I became friends in a support group on Facebook. Her dad passed away of prostate cancer recently. She and her husband Andrew had driven here from Wichita, Kansas, about seven hours away to meet Sharon and me, and visit Denver. We had a dinner date with them Saturday evening. Though I was tired, the steroid kept me going. And I was excited to meet these friends I'd made online face to face.
Our time together was wonderful. We felt like we'd been friends forever. And now we are. When we drove home for the night, I felt good about how the day had gone. I had had enough energy to get through it all, and thought I was tired enough to sleep when I went to bed. But I was wrong.
I could not sleep. The stimulant effect from the steroid kept me awake. As I lay there, buzzing from this steroid, I began to pray. I prayed about the next event of this marathon weekend; my speaking engagement at our old church, Denver First Church. I was scheduled to speak for about ten minutes in two services. I had been praying about this for weeks, but still had no idea what I would say. Each time I prayed about it, I asked God to tell me if he had anything specific he wanted me to share. If I didn't sense him leading me in any particular direction, I'd try to follow where the Spirit led in the moment. Vamping for ten minutes is no problem for me.
I prayed that prayer again last night as I lay there, trying to sleep. This time, God gave me something. A complete, coherent message, lasting about ten minutes, in whole cloth. I got very excited. I ran through it in my head three times while lying in bed, and it stayed with me. I knew what I was supposed to say. I thanked God with tears in my eyes for this message, and asked him to help me do it justice.
Finally, I slept. For about five hours, I think. I awoke at 5:45 AM. I needed to be at the church by 8:30 for sound check, so I thought I was up for the day. But for the third time in eight months, I had an episode like the ones I describe in A Scary Episode and Episode 02. I was overcome by a wave of dizziness, with sweat coming out of every pore in my body. I had to literally crawl back into bed. I laid there for a while, just trying to recover.
I was devastated. How could God give me that message, and then allow this to happen? I couldn't understand it. I thought I'd have to stay in bed all day, and miss my chance to share what God had given me.
I called Hospice first. I explained what happened, and they set up a nurse visit for today. Then I called my friend Shaun, who is the worship pastor at this church where Sharon and I were active for 34 years. It was 6:30 AM, but he was up working. The life of a worship pastor. The services were at 9:00 AM and 10:30 AM. He asked if I could possibly make it to the 10:30 service. We had four hours till then, so I thought that might be doable. I remembered that I got through a Littleton Conservatory Of Rock show the day of my first episode, so as bad as I felt, I knew it might be possible, even though this one had happened much closer to the event time, and I am much weaker now than I was then.
I did make it to the church, but had to move very slowly and carefully. I couldn't stand up for long, so they got me a stool. When the pastor introduced me, I climbed the stairs to the platform slowly, hanging onto the hand rail. It's a big stage, and crossing to the center had never taken me that long before. But I made it to my stool, and delivered the message God sent me there to deliver. The video is on my YouTube channel here.
I went long, as usual. But it was amazing. God was very real. And he proved again that it's not me, it's him. I am so weak, but he is so strong. I should have known he wouldn't give me that message without enabling me to deliver it. That's what he's been doing from the beginning. Using my weakness to show his power. He must increase, but I must decrease. (John 3:30)
I don't know what this experience means with regard to my future. If I can't sleep after taking the steroid, how will I get through rehearsal days? That's a question I'll ask my nurse on Tuesday. I cancelled today's visit. I decided to sleep instead. But I am doing those rehearsals until I can't leave the house anymore. That's non-negotiable. In fact, I still plan on performing in the show.
The last time I saw my nurse Carolyn, I told her the date of the show, and asked her how realistic it is for me to expect to be able to perform on January 27th. She smiled and said I should probably plan on just being a spectator. But I need that goal date. And I need to keep doing what I love. If I don't, I might as well lay down and die. So I want to find a way to keep doing it without a drug keeping me awake. Maybe a lower dose, or a different drug.
You may say it happened because I'm overdoing it. You may be right. But at least I have no more Sunday morning commitments after rehearsal days from now on.
Here's an interesting thing. I just checked the dates, and these episodes have come at intervals of four months apart. The first was in March, the second in July, and this one in November. If that timing holds, and I'm still here next March, at least it will mean I can still get out of bed. They always happen within a few minutes after I get up. But if another one happens soon, I will need to go off hospice care to get it diagnosed. Episodes like that are too dangerous for me now.
But I wouldn't trade this weekend for anything, regardless of the difficulties. For one, I got to hear my protege sing Sweet Child O' Mine by Guns 'N' Roses for the first time. That was worth the price of admission right there. Then to meet such wonderful friends as Victoria and Andrew, and be able to spend some time with them. And to top it all off, my disease knocked me down, but God got me back on my feet and enabled me to fulfill his purpose for me. It was a marathon, but it was more than worth it. #waroncancer #bearingwitness